Help and Thank You

It’s been almost 7 days and 12 hours that I’ve gone without internet and I am gently reminded just how much a product of the multi-tasking, turned-on tech generation I am. I think going this long without wi-fi is my generations equivalent to camping. I’m pretty sure they call this roughing it. And I’m pretty sure my parents would call me a pansy.

This is an easy problem to fix, as most public restaurants and coffee shops have free wi-fi these days but since I’ve basically spent the last seven days IN BED or using some other piece of furniture as though it is one, I haven’t been able to take my little coffee shop trips like I’d planned.

I’m not exactly sure what’s going on, but since the day after I arrived here, I’ve been crashing about an hour after I wake up. Apparently my adrenal glands aren’t functioning properly and I’m bottoming out after I wake up. And not just “Gee I’m sleepy I think I’ll lay down for a bit” kind of crash. (Since becoming sick I have no idea how a power nap works. I just know 15 minutes could never ever ever ever be enough when I’m in a crash.) It’s more like hitting a brick wall where the only thing to do is go back to bed. If that sounds depressing, well, yeah, it is a bit. But there is no such thing as faking it. I made it to dinner at my cousins Shawns house after three days in bed but didn’t feel like I could keep my head up to play cards after dinner. And we ALWAYS play cards after dinner. That’s what you do in Colorado. That’s what you do when grandma is around. And that was just one of many things I’ve had to miss out on since arriving, which is very challenging emotionally for me. I’m the youngest of four, so basically since birth it’s been my prerogative to just not miss out on anything. But that affect right there is one of the hardest parts of this illness, many times even harder than the physical pain itself.

A few nights ago after spending the last two days straight in bed, I felt like I started to lose my mental strength. My siblings had left to go visit with old family friends who I’d really like to have seen but I just couldn’t make it happen. When I’m sick like that I’ve always felt it’s best to be alone since I’m not a ton of fun to be around and basic “sounds” really bother me. But then after everyone left, I got sad and wanted them to come back again. All of my siblings are here and we have taken over my grandmas little house. My brother has been sleeping on an air mattress in the middle of the living room–and this has really worked out for me, because I basically get to be in bed while simultaneously hearing to the conversations and sounds and chaos that ensues when more than one Gelpi is in a room together.

The truth is, I find myself looking for an answer to all of this and there often isn’t one. There are a lot of questions I have about my life that most of the time I am able to let go unanswered. But during those times like a few nights ago, I can’t escape the questions so easily, and I feel anger about them because it simply doesn’t make sense to me. I was angry that most of my vacation has been spent lying down. Angry that I was missing out on my favorite activities. Jealous of other people’s health. Angry that I rarely get to see all my siblings at the same time, and now here we are all together but I can barely get out of bed. Marc Nepo says it’s our job to make sense out of our pain. So that is what I tried to do the other night as I did the only thing I promised I would do that day–take a bath. Big day for Mary!

During dark times like that, I don’t often have big revelations or hear the voice of God. I just let myself feel the pain and then remind myself that tomorrow is another day and say some prayers. There are two prayers I say when I’m all out of juice and all together they make up three words. And here they are: “Help” and “Thank You.” When I’m too tired to spell it out for the universe, (and let’s get real, I shouldn’t have to spell it out for the universe) those are the prayers I say, and honestly it feels like enough. The help prayer is for strength and the thank you prayer is for my family, particularly my siblings. They have taken phenomenal care of me since arriving, and my sister Amelie has been force feeding me protein every two hours. Even when I’m cranky and don’t feel like moving, talking, or eating. They bring me home leftovers and pick up my prescriptions and lie to me when I ask them if the party I missed out on was any fun. Each of them is an invaluable gift to me. Sometimes I think about my life and think maybe I’ll never get married. Maybe I won’t find “The One” or my soul mate or whatever they talk about on Sex and the City. And then I watch us at work together and it hits me that maybe I don’t need that. Sometimes my mom and siblings feel like all the soul mates I could need. (Monty too of course) That being said, I’m sure they’re all hoping that one day I’ll be able to sustain myself and won’t require an air mattress in the middle of their respective living room floors and I am hoping for that day too. But there is just a lot of love between us and often I feel like my glass is overflowing with the stuff that matters. And pain and exhaustion aside, that feels pretty good. At the end of the day, you ask yourself; do I have what I need? And I do. I have modern medicine and the smell of my grandmas house, 10 more minutes of free wi-fi and unconditional love and the answer is clear. Today was hard, but I had enough.

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21 thoughts on “Help and Thank You”

I get these similar “crashes-shortly-after-waking” that you mention as well. Have been getting them for a few years now and always happens about 1-2 hours after waking up. My cortisol saliva tests showed low cortisol levels at this time (and a very steep drop in levels from my first cortisol levels of the day). I guess what I’m wondering is: have you dealt with these “shortly-after-waking-crashes” frequently or much in the past? Any ideas on how we could help prevent them? Thanks!

Wow. This post is great writing, and the sincerity of the content struck me on a couple of levels. After your opening about the internet and being a part of the ‘turned-on tech generation’, one line in particular stood out: “The truth is, I find myself looking for an answer to all of this and there often isn’t one.” You’ve really hit on the strangest conundrum of our current day and time… Now with the internet and integrated technology, we have so many ‘answers’ out there at our disposal, just an unbelievable amount of information… but, when it comes to answering the questions that really matter… We are no closer than we’ve ever been :\

Yo Anna. You’re right about that. I’ve asked Siri what happens after you die and she didn’t know the answer :/ But maybe asking the questions is more important than immediate answers. At any rate…thanks for visiting and for your feedback. If you come across the meaning of life..let me know! ;)

Do you take anything for adrenal support? My naturopath had me take something made of “porcine adrenal gland”– yes, you read that right, piggie adrenal– and other stuff like licorice. it did actually help me after i took it for months. i wonder if you could take something like that when the crash comes? i feel for you, that’s for sure! i’ve whined at sooo many people lately, “i’ve figured out ways to cope with the pain, but the fatigue is killing me!!” Mostly they don’t get it, but does that stop me from saying it? No, of course not. It’s good to come here and know i’m not (entirely) crazy. :-)

GAH! Reading my comment i realize what an embarrassingly stupid question that was to ask you–you’ve been doing this eons longer than me. i guess i still don’t understand how we can take all this crap (that my regular medical doctors look at me like i’m a head-case for taking) and STILL crash! i don’t crash as badly as you, i “only” have fibromyalgia, not the added joys of cfs etc. i guess there’s still so much i don’t quite understand. What kinds of adrenal support do you take? i think i could use something for maintenance. and of course my insurance doesn’t cover any of the “extra” type tests like the saliva one for adrenals. Silly me for thinking they actually care about my health.

The words that are here are “I’m proud of you”. It sounds odd since I only know you through your amazing posts but that’s all that keeps coming through me is how brave you are, how much surrender fills your heart, how much permission you give yourself to have what you’re having. And that love fills your heart. No matter what. Keep it up Gelpi — you are indeed an inspiration.

I’m so sorry Mary. I hope your crash is over soon, and you’re going to be able to get back to your regularly scheduled CFS/FMS stuff and things. Sometimes I forget how bad it can be…and end up bitching and complaining about my normal pain/fatigue days way more than I should. This happened to me very recently as well. Mine was more of a severe pain crash, and I simply couldn’t do anything. I left work early, went home, tried to bathe it off to no avail, and then just laid in my bed (although that was also entirely uncomfortable) struggling to find a position that hurt the least worst. I take for granted my lesser pain days (if you can call it that) where I can still function and allow the non-believers to justify to themselves that since I can still smile when they talk to me that it’s all in my head. I’m leaving work early today in fact to see my doctor about the horrific nerve pain in my right thigh (think Dr. House) and I already see the disdain in all of my co-workers faces, as I also had the pleasure of seeing our First Lady on Wednesday afternoon…but after the 2 hour speech and standing amidst 2400 other people I was too weak to return to work and did not finish out the day then as well. Even though after my appointment I will be forwarding my work phone to my cell phone and working from home until my normally scheduled time..it doesn’t matter because that is something that they feel is “given to me” and not them even though, I look fine to them. Sigh…Sorry to Rant Mary…all I’m saying here is that I feel your pain, and hope you’re able to recover soon. <3

I feel your pain too, and I know how insanely hard full time work is with this illness. I used to get attitudes from people as though I were given “special treatment” because I was sick..but most people don’t realize we would trade with them in a heartbeat. They don’t understand because at this point they can’t…but you have enough to deal with in taking care of yourself, so don’t make convincing others your goal. All you can do is you, and today. The truth will find a way to emerge on its own. Hang in there..sending health and happiness back at you.

I definately have to agree with the fact that fatigue sucks more than pain, at least you can still keep plodding along when you’re in pain. Once you crash, that’s it. I find the days I struggle the most with are the days when I’m not in much pain, but the fatigue is too bad to do anything. It just feels hugely unfair.

I would totes choose pain over fatigue..much easier to manage. But I don’t get a choice, so these are the moments we have to try to embrace even though it’s not what we want. Being “here” but wishing we were “there” is the opposite of presence..so I’m working on it. Thanks for reading, and writing.

I definately have to agree with the fact that fatigue sucks more than pain, at least you can still keep plodding along when you’re in pain. Once you crash, that’s it. I find the days I struggle the most with are the days when I’m not in much pain, but the fatigue is too bad to do anything. It just feels hugely unfair.

Love and miss you Mary. I had a dream about you last night, you were active and happy and told me about how you lost 101 pounds. I guess you were overweight. I bet your gma’s happy you finally made it. So happy you have your family that loves you so very much!

Mia!! That dream sounds awesome. I miss you and our talks..I hope you’re well. My grandma was happy to have me home and it felt good to be there. Let’s rendezvous when I’m back in Nola. I’m going to go weigh myself now.. ;)

You have the strength to go on from one day to the next, and seem to do it with dogged determination. I have Fibromyalgia and CFS, but my cases are mild and in general I’m able to function, with 12 hours of sleep a night, and about an hour of unwinding my body once I wake. I don’t know how you do it, and still maintain your sanity. Your family sounds like the ideal family to have in your situation, and I’m sure they are all more than willing to do whatever it takes to help you. I hope this doesn’t embarrass you, but you’re an inspiration to me. Whenever I start to feel that “why me” attitude, I think of your wisdom and strength. Of course we all have moments of fear and anger. Why wouldn’t we? The thing is to get over them. I have a huge St. Bernard named Molly Brown who has heard more than I’m sure she wants to of my complaints and fears. Dogs are so good for that.

That doesn’t embarrass me..it’s inspires me right back. I love to hear from people so thank you for writing. Molly sounds awesome…Monty has heard soooo many things but hey, they’re good listeners. ;) Hang in there, and I will do the same.